NHS Digital has established the General Practice Data for Planning and Research (GPDPR) data collection scheme, to collect and provide access to near-real-time data from GP Practices for planning and research purposes.
The service was due to start extracting data on 1 July 2021, but has been paused until 1 September 2021 to give patients more time to consider if they wish to opt-out.
Regulations already allow confidential patient information to be used and “shared appropriately and lawfully” in a public health emergency.
The Covid vaccine rollout could not have been delivered without the use of this kind of data to ensure it reached the whole population, prioritising them in the most effective way.
GPDPR means that all GP Practices will have to share data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, including information about your physical, mental and sexual health and data about staff who have treated you.
This data won’t include your name and address or any letters or documents or anything over 10 years old.
The data will be “pseudo-anonymised”.
This means that any data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes before the data is shared with NHS Digital.
This process is called pseudonymisation and means that patients will not be identified directly in the data.
NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients where there is a valid legal reason.
Most people seem to agree that using data to develop services and medical research is a good thing.
NHS Digital have developed a 'Trusted Research Environment' that will enable researchers to safely access the data without copying it, and assurances have been given that data will never be shared for marketing or insurance purposes.
But if you are worried about how your data could be used, you can opt out of sharing your data for purposes other than your individual care, and can register a 'Type 1 Opt-out' with you GP practice. This means that from the date that your opt-out is registered, no new data will be collected.
Alternatively, patients can register a ‘National Data Opt-out’, which means that although data is collected, NHS Digital won’t share any identifiable patient data about your health with other organisations.